“We’re not close to done”: Bryan family fighting for cure
By Garrett Ammesmaki,
(Left) Sawyer, Wesley, JeanAnn and Beau Bryan. Sawyer and Wesley were diagnosed with Duchenes Muscular Dystrophy in 2019. Since then, the family has been fighting to raise funds for the costly treatment. Photo:Courtesy
It was during soccer practice in late 2019 that Beau and JeanAnn Bryan noticed something was wrong with their oldest son, Sawyer.
He was 8 years old and started running awkwardly, like he had lost strength in his core. They brought him to Sanford in Sioux falls to run some tests. It was November 5, only a day after his 9th birthday. It took till December to receive the diagnosis.
“Duchenes Muscular Dystrophy,” JeanAnn said. “It doesn’t run in our family. It’s considered a spontaneous event. So, we weren’t prepared at all — we didn’t even know what it was.”
It’s easy to get lost in the specifics — genetics isn’t necessarily an easy field of medicine to grasp. To put it simply, Sawyer has an error in a specific gene that doesn’t allow muscle tissue to heal. The condition is, ultimately, fatal.
Their youngest son, Wesley, wasn’t showing any of the same symptoms, but they decided to get him tested as well. They received his diagnosis in February of 2020, right before COVID struck.
DMD is the most common fatal genetic disorder diagnosed in childhood, affecting 1 in every 3,500 male births.
But the Bryan boys’ condition is considered “ultra rare.” It’s so rare, JeanAnn said, that the muscular dystrophy specialists they are currently working with haven’t seen a single patient with the same diagnosis as the Bryan boys.
Out of the 3,000 possible errors, they both have the exact same error on the exact same gene.
Though they haven’t shown any of the more severe symptoms, yet, without a cure the boys’ fate is inevitable.
Beau sits at the family’s long white kitchen island and talks about gene therapy and the way hollowed out viruses are used to deliver specialized treatment for certain genetic issues.
Listening to him, you’d think he was a geneticist, but the 40-year-old University of South Dakota graduate has worked for Sammons Financial Group for the last 16 years. Right now, he is the director of their call center for annuities.
JeanAnn sits next to him. She graduated in nuclear medicine from Southeast Tech, but currently works in the cafeteria at Venture Elementary, where Sawyer and Wesley go to school.
Both JeanAnn and Beau are very matter-of-fact, and are able to maintain their composure. This isn’t the first tragedy they’ve had to deal with.
Back in 2007, they were expecting twin boys. The couple lost them at 22 weeks due to pre-term labor.
“We were devastated,” Beau said. But, when Sawyer was born in 2011, “we thanked God that we were able to replace one of our boys.”
And once Wesley was born, it was like they had both of their boys back.
“Then to find out they both have a fatal muscle wasting disease — it was just loss after loss,” JeanAnn said.
Though Sanford has neuromuscular doctors, they don’t have any specialists in muscular dystrophy, and the couple didn’t like the conversations they were having.
The doctors told them there was no cure, and that all they could do was “go home and try to love them as best as you can.”
“It was just a slap in the face,” JeanAnn said. “We wanted to do more than that.”
“You go through anger, you go through grief, but at some point you have to decide if you’re going to sit on your hands and keep crying or if you’re going to do something about it,” Beau added.
After some digging and talking with specialists across the country, the family was able to connect with Cure Rare Diseases, a non-profit founded by Richard Horgan in 2017 and based out of Boston.
CRD focuses on developing cutting edge medicine to deal with rare neuromuscular diseases. Treatments for the diseases utilize CRISPER, which is a way to essential rewrite damaged cells.
In August of this year, CRD received FDA approval to do their first in-body injection of CRISPR. It’s the first ever FDA approval for a Duchene CRISPR treatment.
“It’s the best news we’ve gotten since — I don’t know when,” JeanAnn said.
If the first injection is a success, that means Sawyer could see his treatment within three to five years, followed by Wesley. It all depends on funding.
The Bryan family has done plenty of fundraising since the boys’ diagnoses. Their latest fundraising efforts is a Bryan Boys run/walk scheduled for September 24 at Tea City Park.
Those interested in donating or attending the 5K can go to bryan-boys-5k.raisely.com.
So far, they’ve raised $7,790 of this year’s $10,000 goal. Throughout their fundraising efforts, Beau said they have raised around $130,000 total since Sawyer’s diagnosis.
Though it’s a large amount, it still barely puts a dent in the millions of dollars it will cost for each of the Bryan boys’ specialized treatments.
But the family doesn’t intend to give up, planning to make the run/walk an annual event.
“We’ve got a lot of hope,” Beau said. “People need the help now and can’t wait.”
How the disease pronounces itself is on a spectrum and, thankfully, the deterioration hasn’t been as rapid for the Bryan boys. Currently, they’re able to live relatively normal lives.
Sawyer’s wall shows photos of a family trip to Cape Cod, Massachusetts. It was their first trip to visit Dr. Brenda Wong, a muscular dystrophy specialist based out of U-Mass.
On his bookshelf, below copies of Dogman and various other children’s books, is a collection of large rocks with his name written on them above the year 2020 in red marker.
Due to COVID, they had to take an RV instead of flying. That meant Sawyer could bring back any sized rock that he wanted.
“We made a lot of memories on that trip,” Beau said. “We were able to show them the ocean, and we saw Touchdown Jesus at Notre Dame and visited Niagra Falls on the way back.”
Sawyer is quiet and seems as if all he wants is to be left alone with his large collection of crayons on the table in front of him.
“He’s the artistic one,” JeanAnn said. “He marches to the beat of his own drum.”
Wesley is more active and interested in sports.
While they are aware of their shared diagnosis, the boys haven’t quite communicated their feelings on it.
“It hits them in small moments,” JeanAnn said, “when they can’t get into the car or someone pushes them while they’re playing tag and they fall down.”
And while they are still dealing with the emotional aftermath of the diagnoses, Beau and JeanAnn show no sign of slowing down in the fight for their children against DMD.
“We just can’t stop,” Beau said. “We’re not close to being done.”